Difficult Side Effects and Treatment Detour

I went from strong old man to a weak old man in a couple of days.

Bullet Points: (1) my nasty rash went away; (2) Muscle weakness in my neck and back made me a stooped man; (3) Doctors and scans found no cause for this debilitating reality; (4) I have tape holding up both eyelids and walk with a walker to reinforce my weak back.

The Story: It began when I noticed a drooping right eyelid as I was combing my hair on Thursday Jan. 20. I enjoyed teaching my all day Leadership Cohort class but the droopy persisted. As I walked to my office at break i noticed that I was looking at the floor while I was walking. It was quite difficult to straighten up. This precipitated conversations with the advice nurse at Kaiser. As I described the continuing droopy eyelid and head along with blurred vision, she decided to check with the doctor. She soon called back and asked “can you come in for a CT scan tomorrow (Saturday)?” I told her that I had a cancelable trip to Southern California scheduled. She counted asking , “Can come in this evening (Friday)?” I accepted, ended class an hour early and drove to Kaiseer Interstate. The doctor did a variety of tests and noted “You don’t have Bell’s Palsy.” I said “That’s good.” She gave me a very sobering reply: “Maybe not – that points to a stoke” and sent me off to get the CT scan. I soon got the results: No stroke or brain bleed and released me.

To celebrate that, I went to So Cal and did a ministry weekend at Collective LA and my classes Tuesday – Friday in Costa Mesa which went very well and flew home Saturday. .

The students were wonderfully supportive in my weakness. They brought me lunch each day since my usual practive of going with them was not possible. They wrestled with difficult topics and took me down most valuable bunny trails. Both clsses gathered around me and prayied for me as their two day session ended. On Friday, the day I officially reached my 3/4 century mark, Criag brought me a delicious birthday cake to center the celebration.

Walking with my upper body stooped over is exhausting so I got a foam neck brace and a walker which eases difficulty a lot. You know it’s bothering me when I tell you I got wheel chair assist to the gate to deal with the difficulty of walking more than a short distance

Monday’s full ophthalmology work up found nothing. The follow up MRI of my brain, like the CT scan, was “unremarkable” which has become a favorite word! That left no answers for the cause of the muscle weakness other than some sort of a side effect of immunotherapy.

The Nurse Practitioner in today’s (Wednesday) pre-infusion appointment was baffled when I explained my droopy eyelid and fally down head. All she could say was when you turn the immune system on, you just don’t know what might happen.

She reported the symptoms and the highly elevanted aspartate aminotransferase (AST) and Alanine Aminotransferease (ALT) (liver damage indicators) to Dr. Mashru who suggested that I have hepatitis because the immunotherapy drugs have had negative impact on my liver. That was a shocking word to me to say the least.

Conclusion: The cancer focused treatments are on hold while the focus turns to my immunotherapy damaged liver. Thursday morning I will start taking 80 mg of Prednisone each morning (that’s a lot!). I still walk with the walker and wear the neck brace not knowing what is causing the muscle weakness. My eyelid droops so I am following my niece’s example: she used tape to hold her eyes open. Sherry is adamant that she will take care of me and is doing that in very concrete ways. I am laying aside my “Of course I can do it” conviction . . . to a degree.

Finally, Thursday is my Pretty Wife’s birhtday which we will celebrate in a different way this year.

Infusion #3 – And the Rash

My infusions are getting to be routine things. The only questions are which nurse (Kim this time), which station and which color of tape on my arm..

I did forget Sherry’s foam reading pillow in the waiting room. A text to Sherry and the nice receptionist brought it to me. It makes reading my book easier.

This time it was Christopher Wright, Here Are Your Gods. That is some research for Sunday’s sermon “Repentance: The Way Back” from Jeremiah 3. I need to name the gods people worhip todday since we don’t have temples to Ba’al or Asherah in our towns that Christians are tempted to go to. Wright helped me see that we can find those gods that take us away from YHWH by examining what I wonder about that doesn’t lead to YHWH. Ponder the things (or people or systems) in which we place our trust to deliver us from the things we fear. He suggests the gods find their incarnations in things like wealth, sex, race, nationalism, and self-love.

The immunotherapy is having impact for sure. First, my liver numbers (AST and ALT) are up which in normal but needs watching. Second, when Sherry and I got home, I discovered that I was pretty wiped. So I went to bed early and slept solidly for 11 hours!!

The third and much bigger impact is the rash on my back. Now I need to explain that be be a Breshears is to have an itchy back. So toweling after my morning shower is a great pleasure. This rash gave itchy a whole new painful reality. I reported it to Dr. Mashru and he was not surprised. Rashes like this are a common effect of stimulating the immune system. He prescribed anointing with a magic ointment cream and taking a Zertec once a day. I am glad to report amazing results! The picture is after two anointtings and the redness is half what it was 24 hours earlier.

Now the conundrum two fold: (1) the little tube is only 2 1/2 ounces, can be refilled only after 10 days, and my back is big! (2) how to get the anointing when I leave home before Sherry gets up (she said I may wake her – which is a huge offense in my inner rule system!!). The bigger conundrum is what to do when I am traveling. Several have give Ideas in the comments and we may have a solution. I am always open to more ideas that don’t waste the precious ointment.

UPDATE: I talked with Trish, the oncology case manager and we have refills approved. I went to the pharmacy to pick one up and the pharmacist told me the insurance would not cover it since it had been less than a week. I told him the story and my conversation with Trish. He asked several questions, did a bunch of stuff on his terminal, told me he would call me back up which he soon did. I now have a tube of the magic ointment more than 5 times as large as the first and only had to do the copay!

Looking Ahead to 2022

I now have a schedule for infusions 3 through 7. Each infusion will take 3-4 hours for the process with thorough blood work reviewed by either Dr. Mashru, the melanoma specialis who is overseeing the treatments, or a member of his team.

Infusion #3 – Jan. 14 (Opdivo + Yervoy)

Infusion #4 – Feb. 3 (Opdivo + Yervoy – is this the best present for Sherry’s birthday??)

Infusion #5 – Feb. 24 (triple strength Opdivo only from here on)

Infusion #6 – Mar. 9

Infusion #7 – Mar. 25

There will be a PET scan to check the impact of the infusions on the melanoma in my lungs and liver and an MRI of my brain to confirm that the Double Brain Zap destoryed the two nodules and to see if any new ones have metastasized into my brain. Neither have been scheduled yet.

I have a VERY packed teaching schedule involving a lot of travel beginning with a Jan. 10-11 trip to Boise for my Leadership Cohort class and to see Bethany Schlender, my non-legal Daughter, along with Jesse and their five. All of this has an asterisk beside it.

God’s word to me, “this is not the end – keep on with what you are doing” is a foundation I am living by. The almost non-existent side effects of the treatments is a confirmation of His word. The pure joy of pastoring and teaching a bunch of outstanding pastor/students keeps me eager to work so long as God continues to provide strength. My commitment is to watch my body – to go while there is strength and good sleep every night. When I am tired, I live out my New Mexico heritage and take siesta.

My long time friend, Bonnie Holland, sent me this verse: My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever. (Ps. 73:26 NLT) Whether I am strong or failing, I am strenghtened by the presence of the One who was “a man of suffering, and familiar with pain. (Isa. 53:3 NIV) Rather than explain suffering He entered fully into it to bring Joy, Hope, Peace and showed us how to “love your neighbor AND your enemy.”

Looking Back on the 4 Month Journey

To review in bullet points with hyperlinks to previous posts: (1) blood in my urine led to a Sept. 10 CT scan. I made a video of the journey of discovery on Oct. 10 to give context to the journey to date. (2) As I called a break in my Sept. 14 Leadership Cohort class in Boise, my phone buzzed. It was Dr. Wachsmuth calling to tell me that the CT scan showed that the blood came from bladder cancer. But he went on to report a number of nodules distributed through both lungs. That almost certainly meant the melanoma which had been treated surgically in 2015 had now moved into my lungs. (3) As I pondered and prayed that night, God spoke: “this is not the end; keep on with what you are doing.” I have lived by that word through the whole process. (4) Quite wonderous that when we visited Dr. Burt’s clinic on Sept. 28, Sherry and I saw the beautiful, but cancerous bush in my bladder in living color. (5) second contrasting CT scan of my lungs on Oct. 28 confirmed “multiple bilateral lobular solid pulmonary nodules/masses of varying sizes in all lobes” You can see the CT images of my cancerous here. (6) a PET scan on Oct. 9 showed most of my body is “unremarkable” (my new favorite word!) and three “hot spots”: bladder, lungs and gall bladder; (7) an early morning needle biopsy of my lungs was taken Thursday, Oct. 21. Unfortunately when the Doctor pierced my lung, some air escaped and I developed a pneumothorax. He immediately began removing the air, but I had to spend the night in the hospital for continuing care. That led to the famous picture of my co-teaching Prayer and Providence with Todd Miles dressed in a hospital gown sitting on my hospital bed. (8) The bladder cancer was surgically removed Tuesday, Nov. 9. The biopsy showed it to be low grade and contained, so no chemo required. We will look inside my bladder every six months from now on. (9) A PET scan does not work on the brain since the whole brain is a metabolic hot spot, so on Nov. 11, I had an MRI of my brain which showed two nodules there. (10) My first immunotherapy infusion to make my immune system hate the melanoma in my body was on Dec. 4. I had a second infusion on Dec. 24. (11) the team in radiation oncology built my “green mask” to hold my head completely still for an extremely precise MRI on Dec. 7 to map out the targets for my “Double Brain Zap” on Dec. 15. I am glad to say that there has been minimal side effects from both the radiosurgery and the immunotherapy infusion.

When I had the Melanoma before, I laid out four principles to guide me: (1) When I go to the past look for lessons, not regrets. It is easy for me to shred myself for what I did/didn’t do; (2) in the present build plans based on what I actually know so I can act wisely and responsibly rather than feeling helpless; (3) the future is where the “what if’s” are. Satan dwells there. Don’t dwell with him; (4) Jesus is in the present, look for Him. Like the bush in Exodus 3, He is easy to miss.

Infusion #2 is history

Today’s infusion #2 meant another 30 minutes of Opdivo drip followed by 90 minutes of Yervoy drip mixed with about half a bag of saline. Kayla, my nurse this time, used a very warm blanket to prepare my arm for insertion of the IV port and then turned it into an arm pad. Thank you again, Kayla!! The IV pole, AKA my dancing partner, follows me everywhere! I took my Kindle to read a theology text while I was being dripped into. Angie dropped in again for conversation and blessed us with a marvelous apple crisp. She is my hero!

At the end of the time I felt just the same as when I started the process, which is good so long as it also attacks the Melanoma nodules in my lungs and liver. The only side effect so far is a mild skin rash over much of my arms and torso.

The windows look out at the cold Portland weather which is threatening to bring snow to the valley floor Sunday. As I finished my sermon outline before going in for my infusion, I wondered if I were wasting my time and the time of the team that will prepare the fill in the blanks notes for our people.

The miraculously relieving catheter (below) became a problem as the bladder infection succumbed to the antibiotics. I contacted the urology department repeatedly asking about getting it removed. Their earliest appointment was December 30 (!!!!). So I asked Sean Roley, a neo-natal intensive care nurse who is also a member of our elder and preaching teams at Grace, if he could do me a great service. He did and I am deeply grateful.

My next infusion is January 14 followed by assessment before round two.

I continue to marvel at my continuing strength and energy and Sherry’s support as we celebrate our Advent as a cancer patient.

Double Brain Zap!

The double brain zap is done. I laid on the table for 40 “no movement” minutes with Baroque Classical music in the background with the X-ray instrument moving super precisely to blast the two melanoma nodules in my brain (see pictures below). The personally constructed “Green Mask” held my head motionless for the duration. I may have taken a short nap to help maintain the motionless state. Then I was released to go home feeling quite normal.

Last Thursday’s MRI showed that both nodules had almost doubled in size in the three weeks between the two imagining sessions. Growth at that rate made my blood run cold, I have to admit, because there are also nodules in my lungs that are not getting zapped into oblivion. The immunotherapy teaches my immune system to attack them. I am very glad that I have MANY people praying that it will be fully effective. The good news is that there were no new nodules in my brain, something Dr. Frager said is not uncommon. There will be a follow up MRI in a couple of months, a part of the ongoing assessment.

The update on my bladder infection is below

Developments – Updated Again

Sherry and I took Sherry Atkins to see Christmas with The Chosen Wednesday night for her birthday. It is a MUST see.

But the 102.4 temperature I saw when I got home wasn’t good news. Two doctors told me any fever above 100.4 was a warning sign that mandated a call. But it was 10:00, I was tired and Emergency Rooms are packed at that hour. I wasn’t going to die before morning, so I went to bed. The fever broke but returned. I called the advice nurse early Thursday morning. The directions were clear – come to the ER immediately. Gladly it was virtually empty, and I was soon in the treatment room getting tested. The urinalysis was clear: bladder infection. So I got a bag of IV antibiotics and a big prescription of oral antibiotics and was released for a very good day.

I was excited about our early Friday morning flight to see Sherry’s siblings. Our upgrade to first class was just another sign of goodness.  A strong 3:00 a.m. urge to go got me out of bed, but nothing came. I tried all kinds of things over the next couple of hours, but the discomfort grew to serious pain. When Sherry woke for our flight, I told her I wouldn’t be going to Tucson. Her concern and disappointment was obvious but rather than talking, my pain motived me to call the advice nurse . . . again! Sure enough a second morning in an empty ER and speedy assessments. The nurse warned me that inserting the catheter would be painful, but I only experienced immediate relief as a liter of urine drained out into the large bag.

My MVP-Gold status on Alaska served me well. When I told the nice lady what had happened and asked if I could rebook the flight down, she said sure! I called Sherry to tell her we would get to be together despite the hassle of bladder infection and the 1.5 liter bag that brought skeptical questions from security but no need to leave my window seat on the flights. I am now in Tucson Sherry at Liz and Tom’s house. We have had good time with them and with John and Shirley. I have slept a lot!

In the meantime Samantha and Joy are at our Halsey house where their family will be Saturday night to attend David’s graduation from Convergence – without us unfortunately. She discovered an unannounced guest. Guess we need to get the live trap out again or maybe go to Amazon and buy him a present.

I am super proud of David’s commitment and growth as he has spent three years working through the CBNW Convergence program. Since 2005, it has been fulfilling the mission to train the next generation of leaders for the churches. Alas, due to COVID related funding failures David’s cohort was the last and their experience was compressed so graduation occurred Saturday rather than next June. The training is done under a pastoral mentor. In David’s case that was John Hurty, pastor of Stanfield Baptist Church. John is one of “my guys” from two decades ago. Though I was sad to miss the ceremony, I am delighted that John is mentoring David, and David has been mentoring John’s son, Nathan. The mission of 2 Timothy 2:2 continues!

Pastor John Hurty praying anointing over David
The Graduates

UPDATE: The catheter went from major relief to significant annoyance pretty quickly, I have to say. I went to the nurse’s station at my local Kaiser facility on my return to PDX, hoping to end the annoyance, but alas, Dr. Burt wants it in for a week to allow complete healing from the potential damage from the stretching.

Wallace goes free!

Our return home allowed me to check on our unexpected house guest, whom Joy named “Wallace”. The live trap was occupied, I am glad to say, so I took it and him to a bushy location a half block from our house. He poked his grey nose out, liked what he saw and happily sprang out to scurry off to his new digs.

Infusion Outcome

The infusion was easy. Emilie was my nurse and wonderfully careful and caring. She went through the basics of what’s involved and then started the IV. One medication in 30 minutes and the other in 90 minutes and I was done. While the infusion was going, I got a visit from a chief nurse who is a friend of a friend and a wonderful plate of cookies from Angie Maroon, a friend from church who works at Kaiser. It is a sovereign remedy!!

When I was finished Emilie said I looked a bit flushed and asked if I felt anything odd. I told her I felt a bit off kilter (I know – really helpful!!) but no dizziness, nausea, fatigue, upset stomach or anything like that. I had taken my IV pole to the restroom twice with no issues. So she sent me off feeling quite normal and I drove Sherry and me through Friday afternoon traffic, something Sherry really dislikes doing.

We stopped by Western and I greeted the two Leadership Cohort classes with whom I have deep relationships. I thanked them for prayers and support. I deeply appreciate Todd Miles teaching my theology cohort class. When I stepped into the room as that class ended, people were surpised and very glad to see me and meet Sherry. They also reported that they are now converted to Todd’s way of doing theology 😊

It has been 24 hours since the infusion ended and I am still feeling normal. I flew to San Diego to speak at Park Hill Church tomorrow morning and then hang with friends after. Monday I will spend the day taking the teaching team through Galatians, their next teaching series. That will be a blast! Then I will fly home. An indication of God’s blessing on the trip is that I was upgraded to first class both directions! A better indication is that a former student saw me sit down in the food court and joined me with some huge ministry questions.

I think the first immunotherapy session is free from side effects, which is true for many. I am profoundly grateful. God’s word to me way back when I first got the news of the two cancers was “this is not the end, keep on with what you are doing.” That is my guide. The prayer request is that my “go for it” personality would defer to any warning signs of side effects.

The next stage is Tuesday’s MRI to locate the two meloma nodules in my brain with super precision to enable the radiosurgery on December 15 to zap them and only them.

Radiosurgery Consult

Sherry and I met with Dr. Frager this morning to review the treatment on the two BRAF-negative melanoma metastases in my brain (R parietal, R frontal). There is some exacting measurements to be done in preparation, then a single radiosurgery session to zap the two nodules which I hope will be done around December 15. Dr Frager reports that there is less than 10% chance of symptomatic impact (fatigue or seizure) which they will mitigate even further with prophylactic medication.

The picture is from the MRI they did a couple of weeks ago. It shows the larger nodule on the back right side of my brain (the picture is a mirror image with eyes at the top). It is just under 1 centimeter or about half an inch in diameter.

The smaller nodule is less than .3 centimeters or about 1/10 of an inch. It is so small that they considered doing nothing with it and waiting to see what the immunotherpy might accomplish. But Dr. Frager said the immunotherapy which is quite effective in the rest of the body hardly penetrates into the brain. So I affirmed doing the radiosurgery to both spots. Dr. Frager consulted with Dr. Mashru and it will be a “two-fer” in a single radiosurgery session.

If you want to see a larger version of the pictures click here.

The immunotherapy infusion will be Friday afternoon, beginning at 1:00. Dr Frager confirmed that most patients tolerate it well and the treatments are quite effective. Of course results vary by person and I would add by prayers of the saints on our behalf – and there are many for which we are extremely grateful.

I am in Boise where I co-teach my Leadership Cohort class (with Steve Walker) all day Tuesday. I would normally hang with Bethany (our non-legal daughter), Jesse and the three of their five who are not in school before I fly home. Unfortunately Jesse and Bethany are are not feeling well so I went directly to the airport with only a brief and distanced check in on Monday. I did get to tour the addition to their house which will finally give room for their family

Infusion Schedule

I got a call from Kaiser as I was riding in an Uber to the Dallas Fort Worth airport informing me of the schedule of my immunotherapy infusions: Friday, December 3, Thursday, December 23, and Friday, January 14. All will begin at 1:00 and take the rest of the afternoon. Many times immunotherapy has little or no side effects because it stimulates the immune system. This is quite different than chemotherapy which poisons the cancer cells even more than it poisons the whole body. So my prayer is that I will be in the majority who have little negative effects.

The radiation oncologist and have a meeting Monday morning to discuss the radiation treatment for the larger melanoma spot in my brain.

In the meantime, Sherry and I are having a great time with Donn and Susan and Elizabeth and MIchael here in Kansas City. Donn and I went to the Chiefs game after church yesterday. Here is a taste of what we saw. You will hear Donn loudly in the background!